Hope in a pill.
One evening in 1998, Bruce Kilmister caught the last flight from Sydney to Auckland with a suitcase full of HIV medication. “It was very illegal,” says Kilmister, who routinely smuggled better and cheaper Australian treatments to donate to New Zealanders in need. By the time he landed he was tired and eager to get home, but as he proceeded through the Customs area a border control officer stopped him. “When she opened the bag she must have thought she’d discovered the biggest drug dealer in the world because I had about 150 bottles of medication in there.”
Kilmister remembers waiting several hours while his bag was searched. Eventually, he was permitted to leave with a single bottle of antiretroviral treatment for personal use, the rest were confiscated because they had not been prescribed by a doctor. “I was hoping that they would prosecute because it would bring it to the public’s attention that we were in desperate need for antiretrovirals,” says Kilmister. “But nothing ever happened.”
Kilmister, the former CEO of an HIV support organisation called Body Positive, went on to find legal ways to get medication into the country. Even after New Zealand started funding more effective treatments, he continued to import cheap drugs on behalf of noncitizens who couldn’t access subsidised healthcare – this time with the correct paperwork.
Kilmister is now retired, but he’s pleased to see that a new generation of New Zealanders are taking their health into their own hands by legally importing PrEP, a preventative drug for HIV-negative people that protects them against the virus. Medsafe approved a version of PrEP called “Truvada” in February, but at about $1000 per month it’s prohibitively expensive for most New Zealanders.
This price is expected to shrink next year, though. Pharmac announced a proposal last month to start funding the drug in March 2018. This would mean patients who fit specific criteria could access it for a $5 prescription fee.
While he waits for Truvada to be subsidised, Greig Wilson has been ordering a generic variation of PrEP called Tenvir EM for around $50 per month from Green Cross Pharmacy – an online pharmacy based in Swaziland. Wilson, an entrepreneur who owns Wellington’s Ivy Bar, says a catalyst for taking PrEP came when a friend was diagnosed as HIV-positive earlier this year. “It just seemed so unnecessary,” he says. “That could have been prevented just by having this pill.”
Wilson and his partner first heard about PrEP while in Sydney a couple of years ago. “A lot of guys are on it over there, and we were in Thailand in January this year and everyone was on it … it was like as common as toothpaste.” They didn’t know anyone who was taking it back in New Zealand, but after some thorough internet research they made a decision. “We decided that we just wanted to take every precaution we could to prevent getting HIV.”
Greig Wilson says in some places PrEP is "as common as toothpaste". Photo: Unknown
After returning from Thailand, Wilson made an appointment with a GP at the Terrace Medical Centre. He was given tests for HIV and other STIs (a process PrEP users go through every three months) before receiving a prescription for generic PrEP. He uploaded it to the Green Cross Pharmacy website, filled out his details, and placed an order. Wilson says it takes about 10 days to arrive, although many complain that their deliveries are sometimes delayed due to legal misunderstandings.
PrEP comes in the form of pills that Wilson describes as “Smurf blue”. He keeps his bottle next to his vitamin C tablets in his kitchen and has one of each after he wakes up. When he first started taking them he felt nauseous, tired, and irritable, but this passed after a few days. “I’ve had hangovers that have been a lot worse,” he says. For Wilson, the initial side effects are outweighed by the reassurance that comes with PrEP’s protection. “The empowerment of being in charge of your sexual wellbeing … it’s a good feeling.”
Dr Sunita Azariah, a sexual health physician and lead researcher of a PrEP study currently underway in Auckland, says many of her participants feel the same way. “We’ve had a lot of positive feedback. People are really grateful to be involved in the study, to get access to PrEP… a lot of people talk about the fact that it’s taking fear out of sex.”
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A 2015 San Francisco study on the effects of PrEP reported zero new transmissions among patients considered to be at high risk of contracting HIV. In an earlier British study, the drug was proven to be so effective that participants were taken off placebos early. “There was a lot of excitement in the field of sexual health and HIV medicine,” says Azariah.
Access to PrEP in Australia and England has coincided with drastic declines in HIV transmissions. In 2016, the United Kingdom’s largest sexual health clinic reported a 40 per cent drop in new diagnoses, and the first half of 2017 saw New South Wales’ lowest rates since monitoring began in 1985. “We’re not following the same trends as other countries that have had recent drops,” says Azariah, referring to a report confirming 2016 as New Zealand’s highest year on record for new diagnoses. “New interventions like PrEP are needed to try and bring the numbers of infections down.”
We’re not following the same trends as other countries that have had recent drops.
In New Zealand, 89 percent of the people who contracted HIV in 2016 were men who have sex with men. The New Zealand AIDS Foundation explains that this may be because it’s much easier to transmit HIV through unprotected anal sex than other sexual acts. On top of this, a smaller pool of potential partners means STIs spread faster. Experts say that certain gender diverse people may also be susceptible to contracting HIV, but New Zealand specific studies have not been thorough enough to confirm the extent of this.
While regular condom use among men who have sex with men is high in New Zealand, Jason Myers, the executive director of the New Zealand AIDS Foundation, says there is a smaller demographic who have been difficult to reach with condom-based prevention campaigns.
“That group that we’ve always struggled to engage in consistent condom use are really those who have the most to gain from access to PrEP in New Zealand,” he explains. “The proposed funding of PrEP is an absolute game changer for that portion of the population.”
In February, the New Zealand AIDS Foundation launched a new campaign called ‘Ending HIV’ that aims to put a stop to new diagnoses by 2025. It encourages three preventative measures: test often (to lower rates of undiagnosed HIV), treat early (so that patients become ‘undetectable’ as soon as possible, meaning they cannot pass on the virus), and stay safe (using condoms, PrEP, or both).
“What the ending HIV social marketing campaign does is give a nod to this new, much more complex prevention environment,” says Myers. “We have a chance to join those countries that are seeing reductions in HIV incidents because they’re implementing all of the tools that are now in the toolbox.”
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PrEP is not without its detractors, however. After the US Food and Drug Administration approved the treatment, HIV-positive American writer David Duran coined the term ‘Truvada whore’ (a slur that has since been reclaimed by pro-PrEP advocates) and Michael Weinstein, the leader of the AIDS Healthcare Foundation, has dismissed PrEP as a “party drug” that he says will lead to the spread of other STIs.
Andrew Mackenzie, a participant in the Auckland PrEP study, has experienced these attitudes first-hand. Mackenzie is an admin of a Facebook peer support group called PrEPing NZ and also uses a Grindr profile called ‘PrEP Q n A’ to help educate others. He often gets messages from users curious about how to access the drug, but on several occasions people have criticised him for promoting what they perceive as unsafe sex.
“Those people had quite a go at me,” He says. “I don’t think they understood it.” Mackenzie refers to a 2017 study suggesting that PrEP could actually lower the rates of other STIs due to the regular sexual health screenings required for a prescription. “By the time you actually have the conversation with them and explain what it is… then they begin to understand it a lot more.”
Myers also takes issue with intolerant attitudes towards PrEP. “I think there are genuine reasons why some people choose not to use condoms consistently,” he says. “Erectile dysfunction, reduction of partner intimacy, the list goes on… Rather than judge those people for being non-condom users, I think you should be celebrating and embracing the diversity of options that are now before us, making those options available, and educating the community about what they are so that people can make their own empowered choices.”
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Very few doctors are currently prescribing generic PrEP in New Zealand. Richard Girvan, a Wellington-based PrEP user, says that an appointment at his regular clinic was cancelled the day after he made a booking because his GP was unwilling to discuss the treatment with him. “I think this probably points to what’s going to be the most significant challenge should PrEP become funded,” says Myers. “It’s brand new and it’s not well-understood by the clinical workforce.” In response, the New Zealand AIDS Foundation has created a nationwide directory of GPs who prescribe PrEP, as well as online education resources for medical professionals.
“We hear anecdotal evidence all the time about misinformation being given to patients from doctors who, through no fault of their own, are just not up to speed with PrEP as a tool,” says Myers, who believes there’s “a huge amount of work to be done” to familiarise medical professionals with the drug so that they can “prescribe it safely and effectively.”
Regardless, Myers says he was “absolutely delighted” when he heard about the funding proposal. “If I’m honest, it was much faster than we were anticipating.” Azariah agrees: “We thought it would be a long time before we got funded. I think we’re ahead of many other countries in terms of that…. access will be more equitable for people who couldn’t afford it before.”
Although it strongly supports the proposal, the New Zealand AIDS Foundation has reached out to Pharmac with recommendations to improve the suggested funding framework. The current eligibility criteria would make subsidised PrEP available to transgender women and cisgender men who engage in high-risk activities, but Myers believes they should be broadened to include transgender men and intersex people too. “If there was one small thing that would be it,” he says. “But largely we’re really happy with the approach they’ve taken.”
I think we’re ahead of many other countries in terms of that ... access will be more equitable for people who couldn’t afford it before.
Shortly after Pharmanc’s announcement, the New Zealand AIDS Foundation hosted a PrEP community forum at S&M’s, a gay bar in Wellington. The panellists included Wilson, who was nervous about opening up to a room full of strangers about his sex life. “I’d never do that normally,” he says “But I really decided that I want to be an advocate for this and encourage other people to get on it.” After the panel discussion, a blue, pill-shaped cake was served to celebrate the funding proposal.
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Looking back on the early days of the AIDS crisis – before effective treatments were available – Bruce Kilmister remembers the numerous funerals he attended. “Nothing could be done to stop this plague that was rampaging through our community,” he says. Now he has newfound hope. “With the advent of PrEP coming on board, I think we’re going to confine this horrendous disease to the annals of history.”
Myers shares this sentiment, saying that he’s “absolutely, genuinely optimistic” that the New Zealand AIDS Foundation can reach its goal of ending HIV transmissions by 2025 once PrEP is subsidised.
“The science behind the equation is clear,” says Myers, discussing the combination approach of PrEP, condoms, regular testing, and early treatment. “We won’t only halt what were the highest HIV incidents we’ve ever had in 2016, but we’ll seriously reverse them and potentially very quickly.”